Rare Clinical Trial Compensation Legislation Is Signed Into Law
- By BSTQ Staff
In October, President Obama signed a bill into law that will compensate patients for participating in clinical studies of rare diseases. An update to a 2009 law, the Ensuring Access to Clinical Trials Act of 2015 will allow patients with rare diseases to collect up to $2,000 per year without the compensation counting as income that could jeopardize eligibility for Supplemental Security Income and Medicaid. According to the National Organization for Rare Disorders, only a few hundred of the roughly 7,000 rare diseases in the U.S. have U.S. Food and Drug Administration-approved treatments.
The 21st Century Cures Act, which passed the House in May, also contains separate incentives for development of drugs for rare diseases. And, comparable legislation is being crafted by the Senate HELP Committee.
